Data that matters to patients

Distractions didn’t have a chance. My phone was devoid of reception. The New York Times mobile application searched impossibly for a Wi-Fi connection. Conditions perfect for focus: away from a world always on and connected, noisy, and belligerent with information overload. I could have found joy in a single byte. But instead, I was pushed to the limit of sensory deprivation, and I teetered on the edge of insanity. I spent nine hours of my life in a hospital waiting room.

Much of the effort in health reform in the United States has gone toward recruiting 18-to-35 year olds into the insurance pool so that the US economy and insurers can afford the Affordable Care Act (ACA). The assumption here is that health care costs will be less for this young population than for other people, but is this true? Our recent analysis of 6.8 million insured young adults, across 200,000 variable combinations, suggests that young adults may be more expensive to insure than we realize.

Our study shows a high occurrence of mental health diseases among 18-to-35 year olds who have insurance and therefore more affordable access to medical care. Moreover, expenses associated with mental health conditions are very high, especially when coupled with a physical ailment. As the previously uninsured 18-to-35 year olds get access to affordable care, we may see a similarly high rate of mental health diagnoses among this population. The bad news is that the true costs of insuring 18-to-35 year olds might be much higher than previously suspected. The good news is that previously undiagnosed and untreated mental health conditions may now actually get diagnosed and treated, creating a significant societal benefit.

HealthTap refines the answers returned to specific health queries

HealthTap is a community of doctors and clients seeking answers to health questions. Its central service provides immediate access to doctors and their knowledge either by doctors answering client questions in real time, or through a large database of previously answered questions and answers from doctors that are peer reviewed and tagged with recommendations by other doctors. By combining the doctors’ recommendations with data provided by each client on himself or herself, HealthTap provides customized results to queries. In this video, HealthTap CEO Ron Gutman explains unexpected lessons they’ve learned from offering the intelligent search service.

The traditional, office-based model for health care is episodic. The provider-patient relationship exists almost completely within the walls of the exam room, with little or no follow-up between visits. Data is primarily episodic as well, based on blood pressure reading done at a specific time or surveys administered there and then, with little collected out of the office. And even the existing data collection tools—paper diaries or clunky meters—are focused more on storing data that on connecting the patient and provider through that data in real time.

There is no way to get in touch when, for instance, a patient’s blood sugar starts varying wildly or pain levels change. The provider often depends on the patient reaching out to them. And even when a provider does put into place an outreach protocol, it is usually very crude, based on a general approach to managing a population as opposed to an understanding of a patient. The end result is a system that, while doing its best within a difficult setting, is by default reactive instead of proactive.

Despite considerable progress in prevention and treatment, cancer remains the second leading cause of death in the United States. Even with the $50 billion pharmaceutical companies spend on research and development every year, any given cancer drug is ineffective in 75% of the patients receiving it. Typically, oncologists start patients on the cheapest likely chemotherapy (or the one their formulary suggests first) and in the 75% likelihood of non-response, iterate with increasingly expensive drugs until they find one that works, or until the patient dies. This process is inefficient and expensive, and subjects patients to unnecessary side effects, as well as causing them to lose precious time in their fight against a progressive disease. The vision is to enable oncologists to prescribe the right chemical the first time–one that will kill the target cancer cells with the least collateral damage to the patient.

How data can improve cancer treatment

Big data is enabling a new understanding of the molecular biology of cancer. The focus has changed over the last 20 years from the location of the tumor in the body (e.g., breast, colon or blood), to the effect of the individual’s genetics, especially the genetics of that individual’s cancer cells, on her response to treatment and sensitivity to side effects. For example, researchers have to date identified four distinct cell genotypes of breast cancer; identifying the cancer genotype allows the oncologist to prescribe the most effective available drug first.

Herceptin, the first drug developed to target a particular cancer genotype (HER2), rapidly demonstrated both the promise and the limitations of this approach. (Among the limitations, HER2 is only one of four known and many unknown breast cancer genotypes, and treatment selects for populations of resistant cancer cells, so the cancer can return in a more virulent form.)

Modern data processing tools, many of them open source, allow more clinical studies at lower costs

This guest posting was written by Yadid Ayzenberg (@YadidAyzenberg on Twitter). Yadid is a PhD student in the Affective Computing Group at the MIT Media Lab. He has designed and implemented cloud platforms for the aggregation, processing and visualization of bio-physiological sensor data. Yadid will speak on this topic at the Strata Rx conference.

A few weeks ago, I learned that the Framingham Heart Study would lose $4 million (a full 40 percent of its funding) from the federal government due to automatic spending cuts. This seminal study, begun in 1948, set out to identify the contributing factors to Cardiovascular Disease (CVD) by following a group of 5,209 men and woman and tracking their life style habits, performing regular physical examinations and lab tests. This study was responsible for finding the major risk factors for CVD, such as high blood pressure and lack of exercise. The costs associated with such large-scale clinical studies are prohibitive, making them accessible only to organizations with sufficient financial resources or through government funding.Read more…

Health data can go beyond the averages and first order patient characteristics to find long-term trends

Current healthcare cost prevention efforts focus on the top 1% of highest risk patients. As care coordination efforts expand to a larger set of the patient population, the critical question is: If you’re a care manager, which patients should you offer additional care to at any given point in time? Our research shows that focusing on patients with the highest risk scores or highest current costs create suboptimal roadmaps. In this article we share an approach to predict patients whose costs are about to skyrocket, using a hypothesis-free micro-segmentation analysis. From there, working with physicians and care managers, we can formulate appropriate interventions.

The importance of visualizing data is universally recognized. But, usually the data is passive input to some visualization tool and the users have to specify the precise graph they want to visualize. BeyondCore simplifies this process by automatically evaluating millions of variable combinations to determine which graphs are the most interesting, and then highlights these to users. In essence, BeyondCore automatically tells us the right questions to ask of our data.